Taking part in a clinical trial

If you’re thinking about joining a clinical trial for sarcoma, our Support Line is here to offer information and guidance.

Because sarcoma is a rare cancer with many different subtypes, there may only be a small number of clinical trials available at one time, or none at all. This can be frustrating.  

You can sometimes still contribute to research by joining studies that don’t involve treatment, such as surveys or data collection. These studies could help improve future care and may lead to new trials.  

We have more information about emotional support while living with sarcoma.  

Quality of life

Some people find that taking part in a clinical trial gives them a sense of achievement and fulfilment, even if there are negative parts. Others may not feel that way, and that’s completely okay. It is always your choice whether or not to take part. You can take your time to weigh up the possible benefits and risks in a way that feels right for you. 

What a trial for sarcoma involves 

Joining a clinical trial does not always mean you’ll receive a new treatment. The treatment you have will depend on how the trial is designed. You might: 

• be given a new medicine 
• be given the current standard treatment 
• be given a placebo (a pill or treatment that does not contain any real medicine), if there’s no standard treatment 
• have a different dose or method of receiving treatment, such as tablets instead of injections. 

Things you may want to think about when deciding include: 

• what type of treatment is being offered 
• possible side effects 
• how often you’ll need tests or scans 
• how much time you’ll spend in hospital or at appointments, including follow-up sessions. 

To help you make a decision, visit our frequently asked questions page, or call our friendly Support Line. 

Consent, confidentiality, and leaving a trial

If you decide to take part in a clinical trial, the team will be led by a principal investigator. There will also be other members of the team, including a research nurse, who can help you with any questions you may have.  

During the recruitment process, you’ll be provided with a patient information sheet, which will give you more information about what the trial involves. After this, you’ll be asked to sign a consent form. This shows you understand the trial and agree to take part. You can ask as many questions as you need before signing. 

You can leave a trial at any time, for any reason. Your medical care will continue, and your healthcare team will support you whatever decision you make. 

Your personal information and any data gathered during the trial, such as test results, scans, or answers to questionnaires, will be stored securely and kept confidential.

Managing expectations

Phase 1 and 2 trials are not normally expected to offer any direct benefit to patients taking part in them. Although this does sometimes happen, it’s important not to expect this. These trials can help improve treatments for people in the future, even if they do not help you directly.  

After being referred for a trial, you may need further tests, like blood tests or scans, to check you meet all the eligibility criteria. This is sometimes called a screening process. Trials can only take a set number of participants, so even if you’re eligible, there is a chance the trial may already be full.  

Trials can also take months or even years to complete. Sometimes, trials close early or results take time to be shared publicly. It may be a while before we know the full impact of a treatment.  

We have a list of current trials happening in the UK. Find out more on our clinical trials page.